Alison Benjamin 

Exit strategy

She is the brains behind the bill to legalise doctor-assisted death in England and Wales, insisting that the most vulnerable people will be better protected. Alison Benjamin talks to the chief executive of Dignity in Dying.
  
  

Deborah Annetts
Deborah Annetts: "There are too many people out there dying appalling deaths." Photograph: Martin Goodwin Photograph: Martin Godwin

Level-headed, pragmatic, and sensible are not terms always associated with the euthanasia debate. See last week's furore over research that found doctors aided almost 3,000 deaths in 2004, and the strong emotions among opponents to Lord (Joel) Joffe's bill on assisted dying for the terminally ill. But Deborah Annetts, chief executive of the organisation leading the campaign to legalise doctor assisted death in the UK, appears to have a cool head.

Her well-rehearsed rational arguments for why the law needs to change, her insistence when she joined the Voluntary Euthanasia Society (VES) five years ago that it operate within the current law, even her desire to rename the society - which this week became Dignity In Dying - all reflect her common-sense approach.

"My guiding light is that this is not a sensible way of proceeding," she says of the present law, which allows doctors to withdraw or withhold treatment that could hasten death but prohibits the medication of drugs that have the same effect - either at the patient's request, which is known as voluntary euthanasia, or without an explicit request, known as non-voluntary euthanasia.

"If you leave end of life decision making to doctors, under the regulation of criminal law, you end up with a lack of accountability and transparency, possible abuse, and doctors acting in a very covert fashion. The only way you can make it safe is to regulate it using the civil law."

Personal choice is at the heart of the debate. "It should not be doctors or family making decisions for us, but it needs to be within a safe regulatory framework," she insists.

Annetts is "absolutely certain" that the Brunel University study showing that nearly 3,000 deaths of terminally ill patients last year - just 0.5% of the total - in which doctors actively intervened, has underestimated the scale of the practice in Britain.

"Every doctor I've spoken to, and I've spoken to thousands, has knowingly hastened death or shortened life with opioids," she claims. "Often they will leave medication on the side of the table and tell their patient: 'Oh you wouldn't want to take too much of this because you know what taking too much could do.' Doctors are too scared to admit it because it's murder, it's life in prison, so you're never going to get to the truth."

Unbearable pain

It is not only doctors who can end up on the wrong side of the law. People who fail to prevent a friend or relative committing suicide in the face of unbearable pain can be charged with manslaughter. "Our helpline receives around one call a month from someone who's been dragged down to a police station and treated as a heinous criminal within an hour or so of their loved one dying," Annetts says. "Because they're traumatised and desperate to tell someone what's happened, they'll blurt it all out without a solicitor. Later in the process we'll get a call asking if we know a lawyer who can help them. We have some we can put them in touch with."

Recent cases suggest that a person putting themselves forward as a mercy killer has a good chance of getting off. This is why Annetts thinks the current law is so unsafe, especially for vulnerable people - "because it looks at everything after the event". The disability lobby is opposed to the bill on assisted death for the terminally ill on the grounds that it "serves to diminish the value that society places on the lives of disabled people". But Annetts argues that vulnerable people who fear they are a burden to their family will have more protection than they do now. "If there's any whiff of burden [under the terms of the bill] the patient will not get an assisted death," says Annetts.

The bill is restricted to patients who are terminally ill, with six months or less to live, in unbearable pain, mentally competent and have made persistent requests to die, and includes 20 safeguards including an assessment by two independent doctors and consultation with a palliative care expert to explore alternatives. Concerns that investment in palliative care will suffer have not materialised in Holland, which legalised medically assisted dying in 2002, or in Oregon, which since 1997 has permitted physician assisted dying. In fact, the opposite is true.

Annetts, a lawyer, is the brains behind Joffe's bill. She began drafting it three years ago after the death of Diane Pretty, who had motor neurone disease, and whose case she took unsuccessfully through the English courts and the European court of human rights. Pretty had wanted her husband to be allowed to help her commit suicide in the last stage of the disease.

"She was the most amazing woman I have ever met," says Annetts. "Very focused, brave, courageous and charismatic. I thought, she's been so important, we can't lose this. We knew there were parliamentarians who wanted to take a bill." A VES member and human rights lawyer, Joffe stepped forward. The two have been working together ever since.

Second reading

The third version of his private member's bill, due to have its second reading in the House of Lords shortly, is now confined to "indirect assisted dying", which means the patient has to self-administer any medication requested from a doctor. It is fortuitous, then, that the VES has been renamed Dignity In Dying.

Set up as the Voluntary Euthanasia Society in 1935 by members of the church, doctors and lawyers, the organisation has undergone name changes before. In the early 1980s it was known as Exit but reverted to its original name after its then director, Nicholas Reed, received a suspended sentence for assisting suicide.

That episode was hanging over the organisation when she joined in 2001, says Annetts. "It was inward looking and had lost its way." The new name, Dignity In Dying, is the last in a series of reforms she has instigated to transform the organisation into a credible, authoritative and professionally-run outfit. It now has more than 100,000 members and supporters, compared with 12,000 when she joined.

There have been a few casualties along the way, including long-standing board members who did not like being told they would have to operate within the present law. This means that someone contacting Dignity In Dying for details of a euthanasia centre in Switzerland, for example, will be told that it is called Dignitas and is located in Zurich, but will not be given its website address or its phone number.

With Joffe's bill enjoying overwhelming public support, does Annetts feel success is finally within reach? A lot depends on whether the bill is given time to make its arguments in parliament, she responds. Should it fail, though, Dignity in Dying is committed to bringing it back to every single parliamentary sitting. "There are too many people out there dying appalling deaths for us not to," says Annetts.

And if it does become law, will Dignity in Dying become obsolete? "No," she replies. "There will always be a role for the organisation as an advocate for patients' choice at the end of life; promoting living wills; looking at pain relief and where people die - they say they want to die at home, but many end up in hospital. So there is a huge role for us to make the dying process better."

Curriculum Vitae

Age 45.

Status Lives with her partner in west London.

Education St Albans girls school, Hertfordshire; University of Oxford: politics, philosophy and economics degree; Chancery Lane Law School: solicitor qualifications.

Career 2001-present: chief executive, Dignity in Dying (formerly the Voluntary Euthanasia Society); 2000-01: assistant director, Public Concern at Work; 1994-99: partner and head of employment law, Stephens Innocent: 1989-94: solicitor, Eversheds; 1987-89: trainee solicitor, Theodore Goddard; 1983-85: NHS administrative trainee.

Public life 2003-present: vice-chair and legal director, medical information charity MedicAlert; 2003-present: trustee, Law Society charity.

Interests Old films, museums, tennis.

 

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